The Strategy plan of National Neuromyelitis Optica Spectrum Disorders Registry System (ORP-09)

Background: Neuromyelitis optica spectrum disorder (NMOSD) needs a reliable standardized information registry system to support policy-makers systematic strategy to improve quality of care. So, it is necessary to have a strategy plan for monitoring NMOSD patients in a well-organized method.
Objectives: To define the design method of the National Neuromyelitis Optica spectrum Disorders Registry System in Iran (NMORI).
Methods: The NMORI is a population-based registry that systemically identifies and collects all NMOSD subjects' data. The system focuses on collecting inclusive and important data on the epidemiological and clinical indicators of NMOSD, this includes a set of variables: ID number, baseline characteristics, Expanded Disability Status Scale scores, disease progress, treatments (Table 1), laboratory findings, medical history, pregnancy background and lab data (Table 2). Data is gathered from all available sources, including public and private hospitals, clinics, and neurologists' offices. The collected data recording daily in District Health Information System 2 (DHIS2) software, a web-based instrument planned to provide healthcare users with comprehensive reporting and analytical capabilities.
Result: A active supervisory frame (i.e., physicians, registrars, data collectors, & data entry workers) works in scientific and systemically registry system under supervision of 4 committees. The NMORI designed in 2024 and currently includes several provinces across Iran. The result of NMORI is to monitor and supervise how to treat and follow-up patients and ultimately improve the quality of care and life subjects, reasonable allocation of treatment resources, and providing scientists with novel ideas to carry out research projects. Consequently, NMORI has adopted frequent national and international collaborations aimed at addressing important health and clinical issues.
Conclusion: The NMORI system delivers appreciated insights into NMOSD treatment and patient quality of life by offering wide-ranging data on disease incidence, risk factors and progression. This system has capacity to increase the effectiveness of care protocols.